Margaret Otlowski

Pro Vice-Chancellor (Culture and Wellbeing) and Professor of Law

Professor Margaret Otlowski is focused on the relationship between the law, health and ethics. She is passionate about protecting people from harm in this era. Reviewing laws, and recommending change in light of new ethical questions is a fundamental aspect of her work.

When health technology and ethics collide: reviewing and updating the laws that protect us from discrimination and harm.

How would the philosophers of the Enlightenment have reacted if they could see into the future and how we live in this millennium? The Age of Reason, which began in their lifetime, triggered rapid technological innovation. Technology has been the catalyst for some profound philosophical and ethical questions, and it continues to be. We can map someone's DNA from a single hair, perhaps without his or her knowledge or consent. Genome sequencing will soon become the norm. Robots may have the potential to wage wars. We can keep people alive in hospitals even when their bodies and minds are incapable of surviving on their own. We can keep people alive against their will. How do we reconcile the clash of technology and ethics that progress has bestowed on our generation?

Technological advancement is so rapid that the law can be slow to respond. What legal mechanisms can be brought to bear to protect humans from the implications of technology? Who grapples with the ethical questions that our ever-changing technological environment presents?

Professor Margaret Otlowski is focused on the relationship between the law, health and ethics. She is passionate about protecting people from harm in this era. Reviewing laws, and recommending change in light of new ethical questions is a fundamental aspect of her work.

'When technology enables unethical practices to occur, our laws need to be revised to protect people from harm,' said Professor Otlowski. 'To be able to have a tangible impact on policy or law reform through my recommendations is very rewarding.'

'Issues such as euthanasia and the regulation of information regarding genome sequencing demand consideration. How should our laws respond to these changing circumstances?'

Professor Otlowski feels strongly about changing the laws in relation to euthanasia. Her PhD thesis on voluntary euthanasia was so highly regarded that it was made into a book published by Oxford University Press, Voluntary Euthanasia and the Common Law 1997.

'Euthanasia is an example of how technological developments demand a rethink of the law. I still feel passionate about it. Even genetics, a field that can help us so much, raises issues around discrimination and consent.'

Professor Otlowski has served as expert and high-level policy advisor to the government as member of the Australian Health Ethics Committee (AHEC) and the Human Genetics Advisory Committee (HGAC), both of which are Principal Committees of the National Health and Medical Research Council (NHMRC).

Professor Otlowski was appointed chair of the working group responsible for rewriting the chapter on genetics in the NHMRC's National Statement.

By obtaining a strand of someone's hair, it is possible to assess their DNA without their knowledge or consent. Professor Otlowski has produced papers on protecting people from non-consensual genetic testing.

'The possibility of someone's genetic sequence being made available raises a range of ethical questions depending on who has access to this information,' said Professor Otlowski.

How does the law operate in regards to controlling access to someone's genetic sequence? There are considerable grounds for discrimination and the breach of human rights.

'To establish the need for law reform regarding discrimination and consent in relation to genetic testing, we need to understand the viewpoints of the people we are assessing,' said Professor Otlowski. Her genetic discrimination research has involved input from key stakeholders involved in the field of genetics.

'We have surveyed patients who have undergone genetic testing, the insurance industry which has a vested interest in knowing the results, and employer groups' attitudes to genetic testing. It is important to assess these kinds of ethical dilemmas at the coal face.'

'The Tasmanian Law Reform Institute (TLRI) is part of our identity at the Faculty of Law,' said Professor Otlowski. 'It has helped to imbue a tradition of thinking about law reform among our staff and students.'

Connect with Margaret Otlowski

Margaret Otlowski is Professor of Law at the Faculty of Law at the University of Tasmania and a Deputy Director of the Centre for Law and Genetics. Her research has focused on health law with particular emphasis on euthanasia (her PhD was published by Oxford University Press UK) and law and genetics. She has worked with multidisciplinary teams including for empirical research projects such as the ARC funded genetic discrimination project, which she led. Her expertise has been recognized through various national and state consultancies including for the NHMRC and the Australian Law Reform Commission. She has served as member of the NHMRC's Australian Health Ethics Committee and the Human Genetics Advisory Committee, for two triennium (2009-2105) and is currently a member of the Australian Research Integrity Committee. She is Deputy Director of the Centre for Law and Genetics. She was made a fellow of the Australian Academy of Law in 2015. She holds an adjunct appointment as a Professor with the Menzies Institute for Medical Research.

Biography

Margaret graduated in 1985 with First Class Honours in Law. After completing the Legal Practice Course, she did her articles with Page Seager solicitors in Hobart and was admitted to practice as Barrister and Solicitor in 1986. After some part-time lecturing involvements, she was appointed in a full-time academic role at UTAS in 1987. Since then, she has pursued her career through the University of Tasmania culminating in her appointment to a Personal Chair in 2003. In 1992, she completed a PhD which was published in the UK by Oxford University Press (Voluntary Euthanasia and the Common Law). The bulk of Margaret's research has been in the health law area. She has published on a range of subjects in this field, however, her principal areas of expertise are in relation to end-of-life issues and aspects of law and genetics, especially genetic discrimination, privacy and regulatory issues. As part of the team at the Faculty's Centre for Law and Genetics, she has been involved in various research projects funded by the Australian Research Council.

Margaret has been invited to participate in international workshops on biobanks and ethics. She has chaired sessions for the Australian Bioethics Conference, the Australian Institute of Health Law and Ethics, and the World Medical Law Congress. She has been on the editorial board of six law journals and continues to peer review contributions for over twenty law journals.

Career summary

Qualifications

Degree

Title of Thesis

University

Country

Awarded

PhD

Legal Aspects of Active Voluntary Euthanasia in Australia

University of Tasmania

Australia

1993

LLB (Hons)

University of Tasmania

Australia

1985

Languages (other than English)

Margaret is a dual national (Australian/Swiss). She speaks Swiss German/German.

Memberships

Professional practice

Patron, Tasmanian Women Lawyers (TWL) since 2018

Fellow, Australian Academy of Law

Member, Tasmanian Anti-Discrimination Tribunal, 1999 - 2017

Member of the Law Society of Tasmania, Continuing Professional Development Committee, 2015 - 2017

Administrative expertise

Margaret served as Dean and Head of School of the Faculty of Law from 2010 to 2017. Prior to that she served as Deputy Dean/Head of School (2005-2009). She has served from time to time as the Acting Pro Vice-Chancellor for Community, Partnerships and Regional Development and also as Deputy Provost. She has been involved with many University committees and projects , including heading up the team for the development of the University Statement of Values. In August 2017 she was appointed Pro Vice Chancellor - Culture and Wellbeing.

Teaching

Law and Ethics of Health Care, Family Law, Tort Law, Ethics and Social Responsibility

Teaching expertise

Margaret was awarded one of the inaugural Teaching Excellence Awards from the University of Tasmania (1992) in recognition of an outstanding contribution to teaching. She has also received a Teaching Merit Certificate.

Margaret is also involved with postgraduate teaching through supervision of research higher degree candidates (LLM and PhD).

Teaching responsibility

Coordinator of XBR106 Ethics and Social Responsibility (breadth unit).

Research Appointments

Member, Australian Research Integrity Committee since 2017

Member, National Health and Medical Research Council, Australian Health Ethics Committee for the 2009-2012 triennium and the 2012-2015 triennium

Member, National Health and Medical Research Council, Human Genetics Advisory Committee for the 2009-2012 triennium and the 2012-2015 triennium

Consultant to the Australian Law Reform Commission (Inquiry into the Protection of Human Genetic Information and Inquiry into Privacy)

Member, Advisory Board, Australian Twin Registry and Associate Investigator for the NHMRC funded Australian Centre of Excellence in Twin Research (2014-2018)

Member, Advisory Committee for NHMRC Centre of Research Excellence, led by David Mackey, funded for 2012-2016, Translation of Genetic Eye Research Integrating Education, Counselling and Testing with Gene Discover and Gene Based Therapies for Eye Disease

Visiting Scholar at the Hastings Center, Briarcliff Manor, New York (Research Institute), December 1991

Research Invitations

Public Lecture 'Genetic Discrimination in Australia: A Timely Reappraisal, the Queensland Genomic Health Alliance, Queensland University of Technology, June 2018

Member, Expert Panel, Ethical and Regulatory Perspectives on Genomic Testing for Royal College of Pathologists Australia, Sydney October 2017

Member Expert Panel, 'Ethical and Regulatory Perspectives on Genomic Testing' for Royal College of Pathologists Australasia, Sydney, October 2016

Invited plenary speaker for the Australasian Biospecimens Network Association, 'Disclosure of Incidental Research Findings: An Update and Insight into the NHMRC Response' Christchurch, New Zealand December, 2014

Presenter at the International Congress on Human Genetics, 'Legislation to Facilitate Disclosure of Relevant Genetic Information to Genetic Relatives: The Australian Experience' Concurrent Platform Session, 4 October 2011, Montreal, Canada

Invited as international commentator, 'Revisiting Genetic Discrimination Issues in 2010: Is Canada on the Right Course?' This event was co-sponsored by a number of organizations including Genome Canada and the Canadian Institute of health Research and its Ethics Office and the Institute of Genetics in collaboration with the Office of the Privacy Commissioner of Canada. Ottawa, Canada, April 2010

Invited guest speaker, Health Canada Science and Policy Round Table, 'Genetic Discrimination and Privacy and Policy Implications in the Context of the New Genetic Technologies' Ottawa, Canada, April 2010

Invited Speaker, 'Getting the Law Right on Physician Assisted Death (PAD)' World Federation Right to Die Societies, Dying with Dignity – Bridging Principles and Practice, Melbourne, 8 October 2010

Invited speaker for the International Congress on Genetics, (ELSI symposium panel), 'Genetic Discrimination in Australia: Reporting on an Inter-Disciplinary Empirical Investigation' Berlin, Germany July 2008

Invited participant at the Australia and New Zealand Roundtable on Genetics, 'Transforming Research into Practice, Policy and Law Reform' Melbourne, 28th November 2008, organized by the New Zealand Law Foundation – sponsored Human Genome Research Project, undertaken by the Otago University Law Faculty in collaboration with Glasgow's University's Institute of Law and Ethics in Medicine and Stanford University's Centre for Biomedical Ethics;

Regular speaker for the Royal College of Pathologists for their Pathology Update Conference

Connect with Margaret Otlowski

Expertise

Margaret's areas of research expertise include end-of-life issues, family law and aspects of law and genetics, especially genetic discrimination, consent, privacy, biobanking, personalised medicine and regulatory issues. Her research has focused on the interface of law, genetics and ethics with a strong law reform focus. Over the last few decades, her research has been influential in the development of health law and policy in Australia. Along with other colleagues from the Centre for Law and Genetics, she has made numerous submissions to public inquiries and contributed to law reform processes within Australia and internationally. She has also served as consultant on a number of national law reform inquiries undertaken by the Australian Law Reform Commission and for various other state and federal agencies. She also has considerable practical experience in health ethics, having chaired the University Human Research Ethics Committee (Social Sciences) for more than 10 years (1992-2000) and more recently, serving as member of the Australian Health Ethics Committee (2009-2012 and 2012-2015 trienniums). She also has multidisciplinary team and leadership expertise.

Research Themes

Margaret's research aligns with the University's research theme of Better Health and Creativity, Culture and Society.

Collaboration

Margaret has been involved as collaborator in numerous national and international projects in the area of law and genetics with scholars from Canada, the United States, the UK, and within Australia with researchers from a number of Australian universities including the University of Queensland, University of Melbourne, and University of Sydney and Swinburne University.

Associate Investigator for the NHMRC funded Australian Centre of Excellence in Twin Research (2014-2018)

Fields of Research

Law (180199)

Law and Legal Studies (189999)

Family Law (180113)

Labour Law (180118)

Bioethics (human and animal) (220101)

Law and Society (180119)

Criminal Law and Procedure (180110)

Human Rights Law (180114)

Public Health and Health Services (111799)

Medical Ethics (220106)

Medical Genetics (excl. Cancer Genetics) (110311)

Health Counselling (111710)

Genetics (060499)

Legal Theory, Jurisprudence and Legal Interpretation (180122)

Human Rights and Justice Issues (220104)

Preventive Medicine (111716)

Access to Justice (180102)

Research, Science and Technology Policy (160511)

Ethical Use of New Technology (e.g. Nanotechnology, Biotechnology) (220103)

Professional Ethics (incl. police and research ethics) (220107)

Applied Ethics (220199)

Legal Institutions (incl. Courts and Justice Systems) (180120)

Social and Community Psychology (170113)

Social Policy (160512)

Property Law (excl. Intellectual Property Law) (180124)

Intellectual Property Law (180115)

Public Policy (160510)

Australian History (excl. Aboriginal and Torres Strait Islander History) (210303)

Comparative Law (180106)

Commercial and Contract Law (180105)

Administrative Law (180103)

Research Objectives

Justice and the Law (940499)

Expanding Knowledge through Studies of Human Society (970116)

Expanding Knowledge in Psychology and Cognitive Sciences (970117)

Law Reform (940405)

Bioethics (950401)

Health (929999)

Expanding Knowledge in Law and Legal Studies (970118)

Public Health (excl. Specific Population Health) (920499)

Cancer and Related Disorders (920102)

Law Enforcement (940404)

Health and Support Services (920299)

Civil Justice (940401)

Understanding Australia's Past (950503)

Clinical Health (Organs, Diseases and Abnormal Conditions) (920199)

Inherited Diseases (incl. Gene Therapy) (920110)

Social Structure and Health (920413)

Infectious Diseases (920109)

Health Policy Evaluation (920208)

Environmental Policy, Legislation and Standards (960799)

Technological and Organisational Innovation (910406)

Health Inequalities (920206)

Technological Ethics (950408)

Expanding Knowledge in Technology (970110)

Publications

Margaret has published extensively in the field of health law and bioethics, including a book with Oxford University Press (UK) (Voluntary Euthanasia and the Common Law 1997), a number of monographs, book chapters in national and international publications, and more than 80 peer reviewed publications in refereed journals. She has also published numerous publications for professional journals, as well as conference proceedings.

Margaret has been a member of a number of Editorial Boards, including the Australian Journal of Family Law since 1999; Australian Health Law Bulletin 1998-2013; Journal of Bioethical Inquiry 2006-2013; Australian Journal of Labour Law 1992-2008; AGENDA: A Journal of Policy Analysis and Reform 2004-2006.

She has acted as referee for numerous journals, to review manuscripts in medical and health law, family law and labour law including: AGENDA: A Journal of Policy Analysis and Reform; Australian and New Zealand Journal of Public Health; Australian Bar Review Journal; Australian Journal of Family Law; Australian Journal of Labour Law; Bioethics; European Journal of Human Genetics; Health Policy; Journal of Clinical Genetics; Journal of Critical Public Health; Contemporary Nurse; Journal of Medical Ethics; Law and the Human Genome Review; Law in Context; Medical Law Review; Monash Bioethics Review; Monash University Law Review; Personalised Medicine; Public Health Genomics; Queensland University of Technology Law and Justice Journal; University of Melbourne Law Review; University of Sydney Law Review; University of Tasmania Law Review.

Otlowski MFA, 'Status of a Child Support Agreement Under the Child Support (Assessment) Act - Whether an 'Order for the Purpose of s.112AD of the Family Law Act 1989 (Cth)', Current Family Law, 7, (5) pp. 179-182. ISSN 1037-6631 (2001) [Letter or Note in Journal]

Otlowski MFA, 'Ivanovic v Ivanovic: Child Support - Application to vary a Lump Sum Order brought in Conjunction with an Application under s.85 of the Family Law Act to set aside a transaction in defeat of claim', Current Family Law, 6, (3) pp. 115-124. ISSN 1037-6631 (2000) [Letter or Note in Journal]

Otlowski MFA, ''Re Evelyn': The Family Court's Foray into the Complex World of Surrogacy Arrangement', Australian family law - family law news, 390, (July 1998) pp. 5-9. (1998) [Professional, Non Refereed Article]

Otlowski MFA, 'Developing an appropriate consent model for biobanks in a globalized environment: The case in support of 'broad' consent', New Challenges for Biobanks. Ethics, Law and Governance, 18-20 May, 2009, Belgium, pp. 43-44. (2009) [Conference Extract]

Otlowski MFA, 'Tackling legal challenges posed by human genetic research databases: a focus on consent requirements', Public Policy and the Governance of Human Genetic Research Databases Symposium Handbook, 30th November 2006, University of Western Australia, pp. 1. (2006) [Conference Extract]

Otlowski MFA, 'Scaremongering or Duty of Care? A legal perspective on the responsibilities of genetic clinicians and counsellors with regard to the issue of genetic discrimination', XIX International Congress of Genetics Handbook, July 2003, Brisbane (2003) [Conference Extract]

Otlowski MFA, Taylor S, Barlow-Stewart K, Treloar S, Stranger MJA, 'Genetic Discrimination in Australia: an exploration of the nature and extent of the phenomenon within the legal and social context', Australian Law Reform Commission and Australian Health Ethics Committee (2002) [Consultants Report]

Grants & Funding

Margaret has been a Chief Investigator (including first-named) on numerous large Australian Research Council and NHMRC Project grants examining the ethical, social and legal aspects of the new genetics. This has included collaborative work on biobanking; personalised medicine, databanks and tissue banks.

A career highlight was the ARC funded Genetic Discrimination Project (2002-2004); an inter- disciplinary exploration of the phenomenon of genetic discrimination in Australia undertaken with Sandy Taylor and Kristine Barlow-Stewart. The research team was the first to design a research study in this field involving a third party verification component which led to verified data on instances of genetic discrimination in Australia. This study attracted significant interest nationally and internationally and led to a significant high impact publications.

Ophthalmology has always been at the forefront of genetic discovery and this has led to an improved understanding of the biological mechanism of manyinherited eye diseases. This CRE brings together leading researchers from all the genetic eye disease groups across Australia to capitalize on the newtechnologies in ocular imaging and genetic discovery. The research team has a strong track record in identifying and characterising genes that cause bothMendelian and complex blinding eye diseases and in translating these findings into clinical care. Building on our previous experience and using new imagingtechnology such as optical coherence tomography, adaptive optics and micro-perimetry we will progress research to precisely define the natural history ofblinding eye diseases. This is essential for clinical trials to proceed efficiently. Access to a national network of patients and families with specific geneticsubtypes of eye diseases will enable us to facilitate and initiate treatment trials for inherited ophthalmic conditions. In conjunction with patient andcommunity organisations we will develop world leading models for genetic risk prediction and for feedback of genetic results for both Mendelian andcomplex eye diseases. Our work will extend to analyzing health economics as well as the legal and ethical aspects of genetic research. Central to the CRE willbe the training of researchers and eye care providers to develop best clinical practice using our research findings. Our team members are experiencedparticipants in international consortia for eye disease gene discovery; Australias national disease registries and biobanks place us in a key position to alsoparticipate in international gene based treatment trials for a large number of disorders. Translation of this research into care for genetic eye disease ispredictive, preventive, personalised and participatory.

Ensuring the utility and sustainability of tissue banks: Supporting translational research in Australia through informed regulation and community engagement (2012 - 2014)$437,215

Funding

National Health & Medical Research Council ($437,215)

Scheme

Grant-Project

Administered By

National Health & Medical Research Council

Research Team

Kerridge I; Stewart C; Marlton P; Otlowski MFA; Nicol D; Critchley C

Period

2012 - 2014

Grant Reference

1029929

The Australian Legal History Library: Creating historical depth in legal data on AustLII, to improve all legal research (2012)$590,000

Funding

Australian Research Council ($330,000)

Collaborators

Australian Catholic University ($20,000); Australian National University ($20,000); Griffith University ($10,000); University of Adelaide ($20,000); University of New South Wales ($140,000); University of Queensland ($20,000); University of Sydney ($20,000); University of Western Sydney ($10,000)

The Age of Personalized Medicine: Regulatory Challenges for Australia (2011 - 2014)$281,000

Description

New genetic technologies create the potential for personalized therapies and direct- to-consumer genetic tests. Changes to clinical trials and increased reliance on biobanks and data linkage by commercial entities are predicted. These developments demand ethical, regulatory and social scrutiny. This project will: create a map of personalized medicine in Australia; identify ethical, regulatory and social challenges; assess benefit sharing and public trust issues; evaluate and make recommendations on regulatory and governance measures needed to ensure best practice and highest ethical standards. This will help create better regulatory and governance environments for facilitating responsible research and clinical service delivery in Australia.

Funding

Australian Research Council ($281,000)

Scheme

Grant-Discovery Projects

Administered By

University of Tasmania

Research Team

Nicol D; Chalmers DRC; Otlowski MFA; Critchley C

Period

2011 - 2014

Grant Reference

DP110100694

Drafting of Human Genetic Testing paper (2008)$4,564

Funding

National Health & Medical Research Council ($4,564)

Scheme

Consultancy

Administered By

University of Tasmania

Research Team

Otlowski MFA

Year

2008

An Information Paper on the Management and Governance of Biobanks in Australia (2008)$49,090

Funding

National Health & Medical Research Council ($49,090)

Scheme

Consultancy

Administered By

University of Tasmania

Research Team

Otlowski MFA; Nicol D; Stranger MJA

Year

2008

Expand the Capacity of an International Multidisciplinary Research Network Focussed on the Ethical, Legal and Social Implications of Emerging Biotechnologies (2006 - 2007)$20,000

Mercy killing cases in the criminal justice system : an evaluation (1990)$5,000

Funding

University of Tasmania ($5,000)

Scheme

Grant-New Staff Research Priming

Administered By

University of Tasmania

Research Team

Otlowski MFA

Year

1990

Research Supervision

Margaret has been responsible for the supervision/co-supervision of a number of successful postgraduate students (both PhD and LLM candidates) as well as being involved as consultant supervisor for quite a number of other candidates.

Current

2

Completed

11

Current

Degree

Title

Commenced

PhD

Towards an Effective Engagement with the Critiques of Human Rights

2018

PhD

An Examination of Whether and How Discrimination Law Could Use a Conceptual Framework that Incorporates Learnings from Other Disciplines such Learnings about Prejudice and Unconscious Bias from Psychology, and What Effect this Might have on Prevention and Resolution Outcomes

2018

Completed

Degree

Title

Completed

Masters

The Standard of Medical Care in Malaysia: The Case for Legislative ReformCandidate: Joseph Ming Yong Lee

2012

PhD

A Comparative Analysis of the Medico-legal and Ethical Issues Associated with Embryonic Stem Cell Research in Australia and MalaysiaCandidate: Chee Kuen Foong

2012

PhD

Judicial Meetings with Children in Australian Family Law Proceedings: Hearing Children's VoicesCandidate: Michelle Meilin Fernando